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The Scoop on Gluten Free: Research & Practice Tips
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The Scoop on Gluten Free:
Research and Practice Tips
Connecting military family service providers
and Cooperative Extension professionals to research
and to each other through engaging online learning opportunities
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Amy Jones, M.S., R.D.N., L.D.
•Founded and leads the Logan County Celiac Support
group in Bellefontaine, Ohio
•Regular contributor to Gluten Free Living magazine
and serves on the magazine’s dietetic advisory board.
•Chair of the Academy of Nutrition and Dietetics
“Dietitians in Gluten Intolerances Diseases” practice
•Research Interest: Celiac Disease/Non-Celiac Gluten
1. State the etiology, symptoms, and diagnostic process of both
celiac disease and non-celiac gluten sensitivity (NCGS).
2. Discuss the “fad” of gluten-free and the risks to eating gluten-
free without medical necessity.
3. Summarize the gluten-free labeling rule, including
controversial and confusing ingredients
4. Discuss three challenges gluten-free patients have when
eating away from home.
5. Identify two other food intolerances that could cause
continued symptoms in gluten-free patients.
Celiac Disease 101
• Celiac disease is an inherited,
autoimmune disorder that affects patients
of all ages.1
– When a person with celiac disease ingests gluten
from wheat, or related prolamins from barley and rye,
the body triggers an immune reaction that damages
the villi of the small intestine.
– This exposure causes the villi to become damaged,
and can result in malabsoprtion of nutrients.1
1. Case, S. Gluten Free Def Resource
• Celiac disease was once thought to be rare.
(primarily diagnosed in children with diarrhea)
– The prevalence of celiac disease is now thought to be 1 in
100 people. This includes people of all ages.1
– The majority of people (approximately 80%) who have
celiac disease do not know they have it.2
– People with celiac disease may go undiagnosed for years
because symptoms overlap with many other conditions. 1
– The majority of adults newly diagnosed with celiac disease
do not have classic GI symptoms.1
1. Ludviggson, et.al 2015
2. Celiac Disease Foundation, 2017
The Dietary Triggers
• Wheat (gluten)
• Rye (secalins)
• Barley (hordein)
• Non-Gluten Free Oats
• Brewers’ Yeast
100% gluten-free diet is currently the only
treatment for celiac disease.
Let’s Hear From You
Besides celiac disease or gluten sensitivity,
what is the most frequent reason you hear
given for trying the gluten-free diet?
A. Think it is healthier/weight loss
C.Irritable Bowel Syndrome (IBS)
D.“I think I just feel better”
E. None of the above
Who Should be Tested?1
Weight loss Migraines
Bloating Joint Pain
Nausea/Vomiting Neurological symptoms
Elevated liver enzymes
Rash (Dermatitis Herpetiformis)
1. Kelly, et al. 2015 9
Who Else Should be Tested?
• Those with first degree relatives who have
• Those with related conditions1
– Type 1 Diabetes
– Autoimmune thyroid disease (Hashimoto’s, Graves)
– Sjogren’s Syndrome
– Down Syndrome
– Turner Syndrome
– Williams Syndrome
Gluten Intolerance Group, 2015 10
The Diagnostic Puzzle
• Serologic testing
• EGD with biopsies
• Response to the gluten-free diet.
• Tissue transglutaminase IgA Antiboidy (TTG)
-Most commonly used
Pros: low cost, high specificity (95%) and sensitivity1
Cons: TTG may be elevated due to other conditions (type
1 diabetes, autoimmune thyroid disease), not accurate in
children under the age of 2.1
– Also measure total IgA as it affects accuracy of TTG
• about 2-5% of those with celiac disease are IgA deficient
• People who are IgA deficient will often have a negative TTG
even if they have celiac disease.2
1. Elli, et al. 2015
2. University of Chicago, 2016
• Older tests, like Antigliadin Antibodies (IgA/IgG AGA) are
no longer useful for diagnosing celiac disease2
1. Elli, et al. 2015
2. Dennis, Leffler 2010
Endomysial Antibodies (EMA)1
Highly specific (almost 100% of
those with a positive test will have
celiac disease Higher cost, higher
risk for lab error, not as sensitive (5-
10% of patients with celiac disease
will have a negative EMA
Deaminated Gliadin Peptides
Most recently discovered test.
Helpful for diagnosing those with
IgA deficiency, also for young
Putting the Cart Ahead of the Horse
• It is very important for patients to be
screened for celiac disease before going
– Serologic tests are dependent on gluten in the diet.
– If the patient has been eating gluten-free for a
significant period of time (months) they risk a false
negative screening result.
• This has become a issue in clinical practice as more people
are “trying” the diet before proper medical diagnosis.
It’s in the Genes
• The genetic role in celiac disease is well
– Almost all of those with celiac disease carry either a
HLA-DQ2 or HLA-DQ8 (or both).1
– Having a primary relative with celiac disease
increases the chances of developing it.
– 30-40% of the population carries the genes for celiac
disease, but only 1% will actually go onto develop it.1
– Limited use in the diagnosis of celiac disease
Kelly, et al. 2015 15
Why Gene Test?
Even though a genetic test cannot diagnose celiac
disease, it can be helpful to help rule out the
– unclear serological testing or biopsies
– those already on the gluten-free diet and who are
unwilling to challenge for serologic testing
• The gluten challenge involves eating 1-2 slices of bread a
day for a few weeks.1
– A positive genetic test does not mean the patient
should be on the gluten-free diet.
1.Kelly, et al. 2015
• Because no serologic test is perfect, the
gold standard for diagnosis remains an
endoscopy with biopsies.
– Looking for increased intraepithelial lymphocytes to
more severe villous atrophy. 1
– The doctor performing the biopsies must take several
samples from the duodenum.
– Not taking enough samples can cause the diagnosis
to be missed as the damage is often “patchy.”2
1. Elli, et al. 2015
2. University of Chicago, 2017
Non-Celiac Gluten Sensitivity
• There are variety of tests purporting to be able to
diagnose NCGS (including stool or saliva tests)
– However, there is currently no valid biomarker for the diagnosis
– Diagnosis is made by elimination/re-challenge
once celiac disease and wheat allergy have
been ruled out.
• Some controversy on whether gluten is the real culprit in
• Most recent research suggests that there is likely an immune
reaction to gluten in those with NCGS.
1. Catassi, 2015
2. Uhde, et al. 2016
Celiac disease vs. NCGS
• Defined genetic marker
• Serologic testing
• Identifiable villi damage
• Need for careful and
close follow-up to prevent
long term complications
• No defined genetic
• No serologic test/villi
• Unclear exactly what the
immune response is, but
there is likely one.
• Long term complications
Why Go Gluten-Free?
1. Casella et al. 2015
2. Cruchet, 2016
3. Sun, 2016
• There is some evidence that those with Irritable Bowel
Disease (Crohn’s disease) may see some symptom
• Some may try the diet for other autoimmune diseases
(i.e. rheumatoid arthritis, thyroid disease), as well as
behavioral/developmental conditions like ADHD and
– However, there isn’t strong evidence that there are benefits in
– However, there is an increased incidence of thyroid disease in
those with celiac disease.3
Who Else is Eating Gluten-Free?
• Between 2004 and 2011, the market for
gluten-free foods grew at an annual rate of
– $2.6 billion in sales in 2012,2
$6.6 billion in 2017.3
– 2013 study found that 30% of Americans showed
interest in avoiding gluten.4
– Another 2013 study found that 65% of Americans
think gluten-free foods are healthier, and that 27%
chose these foods to help lose weight.5
1. Gaesser, 2012
2. Gaesser, 2015
3. 3. Schultz, 2013
4. NPD Group, 2012
5. Watson, 2013
Who Else is Avoiding Gluten?
• A 2015 study of patients in celiac disease clinics
found that 11% had at some point avoided
gluten without a diagnosis of celiac disease.
– Reasons given included IBS and lactose intolerance.1
• A 2012 pediatric study found that almost 8%
were avoiding gluten without a celiac disease
– Reasons cited included diarrhea, autism, family
history of celiac disease, and behavioral changes.2
1. Tanpowpong, et al. 2015
2. Tanpowpong, et al. 2012
The Fad of Gluten-Free
• Diet books/celebrity physicians
– How can the RDN help provide factual
Are there risks to Gluten-Free?
• Nutritional deficiencies
– B Vitamins, iron, fiber, and trace minerals
– Gluten-free grains products are not typically enriched
• Individuals may fail to meet grain serving
• It’s expensive!
– A 2015 study found gluten-free bakery and bread
products to be 267% more expensive than regular,
and gluten-free cereals to be 205% more expensive.2
1. Mueller, 2011
2. Missbach, et al. 2015
Putting it into Practice
Mr. Keller calls your office to make
an appointment to learn more
about the gluten-free diet. He
read online that wheat causes
diarrhea, and he does admit to
having stomach issues for many
years. He states he tried gluten-
free for a week and felt “a lot
better”. What is the most
appropriate thing to do?
• In August, 2013, the FDA issued the
final rule for the voluntary labeling of
food as gluten-free. The rule went
into effect in August 2014.1
– This rule applies to packaged foods
regulated by the FDA. Also dietary
– Does not apply to USDA regulated
foods, alcoholic beverages regulated by
the TTB, prescription and over-the-
counter drugs, foods in restaurants, and
1. FDA Q&A, 2013. 26
Definition of Gluten-Free
• For a food to be labeled gluten-free, it
must contain less than 20ppm gluten.1
– This includes ingredients and accidental cross
contact with gluten (in fields, transport,
manufacturing, or packaging).
– This is different than food allergy labeling
which applies to ingredients only.
1. FDA Q&A, 2013 27
What Can Be Labeled Gluten-Free?
1. A naturally gluten-free food (like grapefruit or bottled
2. Not made from a gluten-containing grain (i.e. spelt or
3. Not derived from a gluten-containing grain that has
not otherwise been processed to remove gluten (i.e.
4. May have a gluten-containing grain that has been
processed to remove gluten (i.e. wheat starch) as
long as the final product contains less than 20
parts per million (ppm) of gluten.1
1. FDA Federal Register, 2013 28
By Any Other Name
• Other terms that mean gluten-free may include:
– “Free from gluten,” “Without gluten,” and “No gluten”
• Statements like:
– “made with no gluten-containing ingredients” and “not
made with gluten-containing ingredients” are allowed,
but they DO NOT have to comply with the lay unless
a “gluten-free” claim is also made.1
• Terms like “low gluten” and “reduced gluten” are
not regulated terms and not addressed in the
Why 20ppm? Why Not 0?
• There are no analytical methods available
that are scientifically validated to test for
the presence of gluten at <20ppm.
– 20ppm is considered the standard level of
gluten that is tolerated by most with Celiac.
– This is in line with other countries guidelines.1
301. FDA Federal Register, 2013
Most GF foods test much lower
• Gluten Free Watchdog (independent testing
organization) published a study in 2013 which
– 97.5% of the 112 GF products they tested were below
20ppm, and 93% of them were below 5ppm.1
– Takeaway: The vast majority of products labeled
gluten-free already test at exceedingly low levels of
gluten (much less than 20ppm).
1. Thompson, 2015 31
Testing for Gluten
• According to the FDA, manufacturers are
not required to test for the presence of
gluten before making a GF label claim.
– While this may seem confusing, the FDA also
states that manufacturers who choose to use
a gluten-free label claim
• “Are responsible for ensuring that foods
bearing a gluten-free claim meet the
requirements of this final rule.”1
1. FDA Q&A, 2013 32
Testing for Gluten
• The FDA states that manufacturers may
accomplish this by
– conducting in-house testing of starting ingredients or
– employing a third party laboratory to conduct in-
house gluten testing
– requesting certificates of gluten analysis from
– or participating in a third-party gluten certification
1. FDA Q&A 2013 33
Malt and Malt Extract
• The FDA states that items that contain malt or
malt extract cannot be considered ingredients
“processed to remove gluten” and are not
permitted to be included on items labeled gluten-
free, even if the final products contains <20ppm
– This continues to be a point of controversy for
1. D’lima, 2014
2. Thompson, 2016
• Oats are not considered a gluten-
containing grain under the new rule.
– However, regular oats are still at great risk for cross
– It is still recommend to purchase oats labeled gluten-
– The different methods that manufacturers use to
produce gluten-free oats continue to be a point of
controversy and discussion.2
1. Thompson, 2013
2. Thompson, 2015
Naturally Gluten-Free Foods
• The new labeling ruling states that foods that are
inherently free of gluten (i.e. carrots or bottled water)
may be labeled gluten-free.
– But does that mean that Celiac disease patients
should exclusively purchase naturally gluten-free
foods that are labeled gluten-free?
• Not necessarily. Foods that are a low risk for cross contact
with gluten do not need to be labeled gluten-free.1
1. FDA Q&A, 2013 36
Naturally Gluten-Free Foods
• Gluten-free grains (i.e. amaranth,
buckwheat) and mixed food
products made with naturally
gluten-free grains (corn tortillas,
buckwheat noodles) should be
– These grains are at higher risk of
contamination than other naturally
gluten free foods.
1. Thompson, 2010 37
Ingredients Processed to Remove Gluten
• Example given by the FDA is Wheat Starch.
– Wheat starch contains very little gluten protein and
could be included in a product without raising the
concentration of gluten to above 20ppm.
– However, a qualifying statement of “This wheat has
been processed to allow this food to meet FDA
requirements for gluten-free foods” must also be
included on the package.1
1. FDA Federal Register, 2013. 38
• Manufacturers may
continue to use gluten-free
symbols earned from third
party certifiers, like the
Organization (GFCO), and
they can still use that
symbol, provided it’s
“truthful and not
1. FDA Federal Register, 2013 39
Allergen Advisory Statements
• Allergen Advisory Statements
– “processed in a facility that also processes wheat”)
are permitted to be on products labeled gluten-free,
provided the final product contains <20ppm gluten.
– This is a confusing point for both patients and
• Allergen Advisory Statement are voluntary on
the part of the manufacturer
– Do not take the place of good manufacturing
practices (cleaning equipment, etc).
1. FDA Q&A, 2013 40
Which foods are not included?
• As with allergen labeling, foods regulated by the
USDA are not currently subject to the gluten-free
labeling ruling. This includes meat, poultry, and
certain egg products.
– However, the USDA has said that those
manufacturers using a gluten-free label
should follow the same <20 ppm as set forth
by the FDA.1
1. Thompson, 2014 41
• The Alcohol and Tobacco Tax and Trade Bureau
(TTB) governs all distilled spirits, wines that
have more than 7% alcohol by volume, and
malted beverages (beer) that is made with both
malted barley and hops.
– In February 2014, the TTB issued a revision to their
interim labeling policy from 2012 on alcoholic
beverages, which stated that gluten-free claims
cannot be used on a beverage that is made with
wheat, rye, or barley. 1
1. TTB Ruling, 2014 42
• However, the TTB will also allow the statement
“processed or treated or crafted to remove
gluten” for products made with gluten-containing
ingredients IF these products have been
processed to remove the gluten.
– Products that wish to use the “processed to remove
gluten” statement must also include a statement
which says the “gluten content of this product cannot
be verified, and this product may contain gluten.”1
1. TTB Ruling, 2014 43
Eating away from Home
• Quality of life (QOL) studies have shown
that most people on the gluten-free diet
cite eating out to be difficult.
• A 2012 study found that difficulties eating
out led many to intentionally eat foods with
– Even if it was infrequent, it could lead to
continued symptoms and delay in intestinal
1. Lee, et al. 2012 44
• Call ahead, ask about availability of a gluten-free menu or if
the restaurant is able to modify menu items to gluten-free.
• Try not to dine at the busiest time.
• Identify themselves to the server/manager
• Use words like “severe reaction”
• Ideally, choose a restaurant where items are made to order
(and can be easily modified).
• Is there a way the gluten-free dish can be easily distinguished
from other dishes (i.e. different color plate/rim)?
• Consider the areas at most risk for cross contact—prep
surfaces, grill, fryers, etc.
Even if There is a Gluten-Free Menu
• Is gluten-free pasta cooked in a different pasta water
than regular pasta?
• Is there a separate colander available to drain pasta?
• Is there a separate, dedicated fryer for gluten-free items?
• If gluten-free bread is available, request that it be heated
separately from gluten-containing bread.
• Are separate toppings used to make gluten-free pizza?
• How is the pizza separated from other items in the oven?
• Are French Fries prepared in a separate fryer from
breaded items? 1
1. Koeller, 2013.
Preventing Cross Contact
• Is there a separate area on the griddle where gluten-free
products are cooked? (i.e. rolls and buns not cooked in
the same area)
• Are clean pans used to sauté items for gluten-free
• Be cautious with, seasonings, marinades, sauces, and
salsa unless they can be verified as gluten-free.
• Verify original stock (chicken/beef) is gluten-free.
• Verify what is being used to thicken sauces (i.e.
cornstarch vs. flour)1
1. Koeller, 2013 47
Other Challenging Situations
• Office Lunches/Parties
• Religious Customs (Communion)
• Traveling (by air or car)
• Holiday Parties
• Hospital/Extended Care Facility Stays
Gluten-Free and Not Feeling Better?
• Persistent symptoms could be from a
variety of causes. Also known as Non-
Responsive Celiac Disease (NRCD)
– Gluten exposure (inadvertent)
• Most likely cause
– Other Food Allergies/Intolerances
– Lactose Intolerance
– IBS/FODMAP intolerance
• Food Allergies
– Diagnosis via skin/blood testing
– Removal of the allergen
– Diagnosed/managed by allergist
• Food Intolerances
– Negative allergy testing
– Food/Symptom Logs
– Well controlled elimination/reintroduction
• Very common in those with celiac disease
– Common symptoms include gas, bloating,
diarrhea, and pain.
– Typically secondary, caused by damaged villi.
– May resolve on gluten-free diet.
– Avoiding dairy can result in reduced calcium
and Vitamin D intake.
– Symptoms can be mild or severe.1
1. Theethira, 2015 52
Getting a Handle on Lactose
• Reduce/eliminate lactose temporarily.
• Choose reduced lactose/lactose-free
dairy products. Use lactase enzyme
– Check to ensure that all products are
– Encourage other dietary sources of
– Supplements, as necessary1
531. Theethira, 2015
• IBS can co-exist with celiac disease and is more
common in those with celiac disease.1
• IBS symptoms (bloating, pain, diarrhea, gas,
and fatigue) often overlap with celiac disease
• A Low FODMAP diet has been shown to
reduce/eliminate symptoms in over 75% of those
1. Sainsbury, 2013
2. Gibson, 2010
• FODMAPs are fermentable sugars that can cause
abdominal pain, gas, diarrhea, and bloating in
susceptible individuals. 1
– FODMAP is an acronym
– Fermentable (produces gas)
– Oligo (Fructans and Galacto-oligosaccharides)
– Disaccharides (lactose)
– Monosaccharides (fructose in excess of glucose)
– Polyols (sorbitol,mannitol, xylitol)
Shepherd, 2014. 55
Low FODMAP Diet
• Temporarily restrict (a few weeks) high
– Reintroduce different groups in controlled
• Best managed by an experienced RDN
– Introduce foods and monitor symptoms
• The low FODMAP diet is naturally low in gluten,
but not ALL foods are gluten-free. Those should
still be avoided.
A Learning Diet
• FODMAP diet is a learning diet. 1
– Patients should not be on a full elimination
– Goal is to have the most liberal, varied diet
possible while controlling symptoms.
– This can take a lot of trial and error.
1. Rosenbloom, 2016. 58
Putting it into Practice
Mrs. Smith was diagnosed with celiac disease one
year ago. She states she has been compliant
with the gluten-free diet with no intentional
gluten consumption. However, she continues to
feel poorly most days with bloating, constipation,
and gas. You ask her to provide you with a food
record for review and determine that she isn’t
ingesting any sources of gluten.
Putting it into Practice
• Food Record
– Breakfast: Gluten-free rice cereal with milk, yogurt,
banana, and coffee
– Lunch: Large green salad with chicken or salmon,
salad dressing; rice crackers with cheese; canned
peaches; iced tea
– Dinner: Pot roast with carrots and potatoes, gluten-
free dinner roll with butter
– Snacks: Almonds, popcorn, ice cream
Putting it into Practice
What is the most likely culprit of Mrs.
Smith’s continued symptoms?
A. Food allergies
B. FODMAP intolerance
C. Lactose Intolerance
Takeaways from Today
• Strongly encourage proper testing for
celiac disease before starting the gluten-
• Discourage the use of unproven tests for
the diagnosis of non celiac gluten
• Discourage the use of the gluten-free diet
to treat other conditions, including weight
More Takeaways from Today
• The gluten-free label can help protect
patients by requiring manufacturers to
adhere to a set standard.
• Provide key tips to assist in eating away
from home, as this is difficult for many.
• Be aware of other food intolerances which
can cause continued symptoms.
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Nutrition and Wellness
Phytonutrients and Cardiovascular Disease
• Date: Wednesday, March 15, 2017
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• Location: https://learn.extension.org/events/2962
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